Before I go any further here, let me say emphatically and without qualification that I don’t believe helicopter parents - or any parent, for that matter - can cause autism by spending too much (or too little) time and attention on their kids.

I do think, however, that helicopter parents may play a potentially significant role in the ever increasing number of autism diagnoses.  Consider this definition of helicopter parents from wikipedia:

Helicopter parent is a colloquial, early 21st-century term for a parent who pays extremely close attention to his or her child’s or children’s experiences and problems, particularly at educational institutions…. Helicopters parents are so named because, like helicopters, they hover closely overhead, rarely out of reach, whether their children need them or not.

Who better to recognize early signs of autism and bring them to the attention of a doctor for evaluation. So in addition to “increased awareness of autism” as a possible reason for the increased number of diagnoses, we should also consider that “increased awareness of your child” might be contributing to the number of people who have their children evaluated. Which in turn will lead to a higher number of diagnoses.

The interesting thing here, at least to me, is that once a child is diagnosed as autistic the natural tendency of parents, especially those who are already “helicopter parents”, is to become even more involved in their kids lives, to become more overprotective. The nature and structure of our society, especially our education system, builds on this natural tendency to make it for all intents and purposes a necessity.

The challenge for parents is to figure out how to remain involved, as an advocate, in their child’s life without trying to live their child’s life for them. They need to figure out how to evolve, over time, from being a helicopter parent to a young child to being a slow-parent to a young adult.

If only it were as easy to do as to say.

Parenting an autistic child is, first and foremost, nothing more - and nothing less - than parenting a child. Yes it is different, and sometimes (OK, much of the time) more difficult than being the parent of a “normal” child, but that doesn’t change the fundamental nature of being a parent.

Parenting is hard. We try and try and try to get our kids to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a sudden, when we aren’t really looking (or when we’ve kind of given up), they do it, understand it, say it.

At those moments we feel good, not just for our kids and their accomplishments but for ourselves. Sometimes it is hard to put in the long hours, day after day, never quite knowing if it will pay off or not. This is especially true for the parents of autistic kids. But what can you do?

The following quote from George Leonard’s The Way of Aikido applies as much to parenting as it does to any other endeavor to which we apply ourselves.

What we call “mastery” can be defined as that mysterious process through which what is at first difficult or even impossible becomes easy and pleasurable through diligent, patient, long-term practice. Most learning occurs while we are on the plateau, when it seems we are making no progress at all. The spurt upward towards mastery merely marks the moment when the results of your training “clicks in.”

To learn anything significant…you must be willing to spend most of your time on the plateau. [T]o join the on the path of mastery, it’s best to love the plateau, to take delight in regular practice not just for the extrinsic rewards it brings, but for its own sake.

Another way of looking at it comes from a saying I heard a while back:

A truly happy person enjoys the scenery on a detour.

How’s the scenery where you’re at?

This modified version of something I originally wrote in February 2006 was inspired by a tweet today from John E. Smith, aka @StratLearner

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WHAT IS YOUR LANGUAGE

Everyone has their own path to follow through life. Easy to say, somewhat harder to believe because most of our daily experiences involve others who live incredibly similar lives to ours. This sometimes gets in the way of us realizing that there are differences in this world, and that the path that we’ve chosen for ourselves - or that has been thrust upon us - may not be the best path for everyone.

Earlier this week, Dr. Sanjay Gupta from CNN blogged about his recent introduction to and conversation with Amanda Baggs, a 26-year old autistic woman who gets around in a wheel-chair and communicates through a text-to-voice device. In his words, Amanda “opened his eyes about the world of autism.”

Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth.

— Paging Dr. Gupta: Behind the veil of autism

A far cry from how autistics, especially “low-functioning” autistics, are typically portrayed in the media. (Compare, for instance, to this portrayal on ABC’s PrimeTime earlier this week.)

Just as technology allows her to communicate through the voice synthesizer (on which she can type over 100 words per minute), technology - in the form of YouTube - has allowed her to be heard by a much wider audience. In fact, it was her video “In My Language” that caught the eye of CNN. Amanda’s description of the video:

The first part is in my “native language,” and then the second part provides a translation, or at least an explanation. This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not.

I encourage you to take about 10 minutes and view Amanda’s video. If you are already somewhat familiar with autism, this will help you understand even more. If you are not familiar with autism at all, this is a good start in understanding that you really can’t judge a book by its cover.

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Amanda was also featured this week on CNN’s Anderson Cooper 360.

I’ve also written a bit about this on my autism blog in 29 Marbles - Why don’t more people understand this yet?

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A blog post I wrote a year ago. Playing around with David Allen’s Getting Things Done. A recent article in Fast Company. Reading Steven Johnson’s book Mind Wide Open over Thanksgiving. Autism.

All of these things came together in my mind over the past few days. (If the internet is a global cocktail party, and blogs are its conversations, I’m the guy who takes it all in and thinks of something to say as he’s driving home from the party. At least that’s how it feels sometimes, especially with topics such as this one.)

Just over a year ago, I wrote the following:

My early days in Knowledge Management included a lot of time developing, deploying, and getting people to use “knowledge repositories.” (At least trying to get people to use them.) A worthwhile endeavor in some regards, I’ve always had misgivings about the whole idea, at least how it has been implemented in most cases. The cheapness of mass storage these days, and the way we just keep everything, has nagged at this misgiving over the past couple of years.

I finally realized one day that the problem has become not, “How do we remember all this knowledge that we’ve learned?” but rather, “How do forget all this knowledge we’ve accumulated that we no longer need so we can focus on what we do need?”

This same question has come up, albeit in a different context, in that other domain in which I blog: autism autism.

MOM - Not Otherwise Specified recently posted a very interesting piece about the role of memory, and the inability to purge it, in autistic behaviors. In her post, she quotes Paul Collins’ book The trouble with Tom:

Memory is a toxin, and its overretention - the constant replaying of the past - is the hallmark of stress disorders and clinical depression. The elimination of memory is a bodily function, like the elimination of urine. Stop urinating and you have renal failure: stop forgetting and you go mad.

This also plays on my long-held dislike of best practices, at least how most people implement them. If you are so caught up in what has happened before, it is hard to get caught up in what is to come.

In the context of mastery, especially of something new, it is sometimes hard to know when to forget what you’ve learned. You have to build up a solid foundation of basic knowledge, the things that have to be done. And at some point you start to build up tacit knowledge of what you are trying to master. And this, the tacit knowledge that goes into learning and mastery, is probably the hardest thing to learn how to forget.

Sometimes, though, it is critical to forget what you know so you can continue to improve. Witness Tiger Wood’s reinvention of his swing, twice, and Neil Peart’s reinvention of his drumming.

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One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70’s and early 80’s) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd (”Welcome to the Machine” was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point.

I’ve been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song “Time” is an excellent reflection of the fleeting nature of our time in this world. The second verse includes the following lyrics:

You are young and life is long and there is time to kill today
And then one day you find ten years have got behind you
No one told you when to run, you missed the starting gun.

These lyrics are quite literal, and it is not too difficult to catch the meaning. But I gained a bit more insight into these words, especially the last line, while watching a documentary of the making of the album (told 30 years after the fact).

In the documentary, Roger Waters talks about a teenage conversation with his mother and the realization that it was time for him to start living his own life, that the “starting gun” had fired. One of the most important jobs a parent has is preparing kids for life on their own (however you may define that), a life that they are in control of (to the extent that anyone is control of their own lives).

There is a somewhat well defined path that we typically, though not always, can follow with our normal (in the statistical sense) kids. And many of us have come up with our own ways of preparing our kids for what lies beyond childhood.

But how do we let our kids, especially our autistic kids, know that the starting gun has fired?

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Another just as important question; how do we as parents accept that the starting gun has fired and let our kids run their own race?  With regret? Excitement? Fear? Joy?

Next time someone says, “That’s just the way it is,” try asking, “What would be an alternative?”

It is all too easy to get stuck in the rut of doing things the way they’ve always been done just because that is the way it has always been done.  This one little question can make all the difference, if you just take the time to ask - and answer - it. Just think of the possibilities.

This brought to mind something I wrote back in Aug 08 (on my now shut down 29 Marbles blog) that I thought would be appropriate to repost here.

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That’s just the way it is (but don’t you believe them)

Frequent readers of this blog know that in my attempt to understand autism better, I have a tendency to see connections in things that aren’t always directly related to autism.  A lot of times this will come in the form of a song, a TV show, or a main- or sub-theme in a movie (like the X-Men trilogy).

My post yesterday brought to mind Bruce Hornsby’s (excellent) song, The Way It Is (from the album of the same name).

They say, “Hey little boy you can’t go
Where the others go
‘Cause you don’t look like they do”
Said, “Hey old man
How can you stand to think that way
Did you really think about it
Before you made the rules”
He said, son

That’s just the way it is
Some things will never change
That’s just the way it is
Ah, but don’t you believe them

“Don’t you believe them.”  Don’t listen when someone tells you that you can’t change things, that this is how it was meant to be.  Nothing is “meant to be”, that is the wonder of being human, that we determine what is for ourselves.

Well they passed a law in ‘64
To give those who ain’t got a little more
But it only goes so far
Because the law don’t change in another’s mind
When all it sees AT the hiring time
Is the line on the color bar

That’s just the way it is
Some things will never change
That’s just the way it is
That’s just the way it is, it is, it is, it is

Note that in the chorus after the last verse, Hornsby never says “don’t you believe them”.  I don’t know if this was intentional or not, but it is definitely true.  You can make a law, you can tell people what they have to do, but you can’t tell them how to think about others.  That takes education, persistence, and persuasion.

And that, I believe, is the challenge we all face in gaining more understanding and acceptance for autistics, indeed for all people who are different.

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When was the last time you asked yourself, or someone else, “Why is it this way? Is there another way that is better?” When is the next time you’ll ask?

If you know the song, you know that it is a discussion about then-President Bush’s decision concerning stem cells back in 2001. Here’s what wikipedia has to say about the song:

“The Great Debate” is an innovative song by the progressive metal band Dream Theater dealing with the topic of stem cell research. It opens with various sound bytes of individuals’ beliefs and opinions concerning this contentious topic. Both sides of this debate are represented lyrically, and the band challenges the listener repeatedly with the chorus phrase- “Are you justified in taking life to save life?” and “Do we look to our Unearthly Guide?…or to white coat heroes, searching for a cure?”

What really struck me is how little seems to have changed in the last 7 1/2 years.  Consider these verses from the song:

What if someone said
Promise lies ahead
Hopes are high in certain scientific circles
Life won’t have to end
You could walk again

What if someone said
Problems lie ahead
They’ve uncovered something highly controversial
The right to life is strong
Can’t you see it’s wrong

Or, as they say toward the end of the song, miracle potential vs. the sanctity of life. Much the same as what is being said this week.

The stem cell debate reminds me quite a bit of another great debate:  vaccines and autism.  Though the substance of the two debates is different, they are qualitatively very similar: no matter what evidence or arguments are presented, it is very unlikely that you will ever change the opinion of someone who actually has an opinion.

In fact, the very definition of autism in the DSM-IV is based on, among other things, “qualitative impairments in communications.”  As if communications is something that autistics can do on their own.  This is the starting point for change.org autism blogger Dora Raymaker in her post The Dynamics of Communication, in which she reminds us that:

Communication is dynamic. It is an active relationship. Communication is not something an autistic person does or does not do. Communication is something that people do or do not do together. In order to have effective communication, all parties in the relationship are responsible for keeping the communication flowing.

What the DSM is really saying is that autistics are autistic because they don’t communicate with non-autistic people in a way that non-autistic people can understand and they don’t understand the way non-autistics communicate.  Almost like they speak a different language.

Communication is a two way street. We have, in general, spent a lot of time trying to get autistics to understand us, to learn our “language” .  Maybe it is time we devote some time to trying to learn their language.

Just a thought.

This focus on the negative is the most blatant when it comes to working with those with disabilities.  As the father of an autistic son, I’ve seen this first hand.  In a recent interview with WNET, Temple Grandin has the following to say on the matter:

Grandin is good at thinking in photorealistic pictures, but she is unable to grasp simple concepts such as numbers. Grandin, who flunked out of algebra in school, said teachers approach her all the time seeking advice: “How do I get the pictures out of my student’s head?” or “I have a student who is board stiff in algebra, but great in geometry–what should I do?” Grandin said a creative teacher would give the student geometry to practice after algebra class.

People with autism have uneven skills, and it is important to build up their strengths, according to Grandin. “It’s okay for kids to have obsessions. If all a kid wants to do is draw trains, then let the kid draw trains. Show the kid how to draw a train station.” To Grandin’s way of thinking, a fascination with trains may reveal a talent for drawing or graphic design, or lead to a job connected with the railroad industry.

“Parents and teachers should also be asking the question, “What are they going to do when they grow up?” It is a shame for a kid who has the potential to be a computer programmer to end up washing dishes or working at a convenience store. Grandin said what is so sad is that these children can contribute to society–just as she has–but that some are made to feel that their contributions are not welcomed or appreciated and therefore become totally dependent on family or social services for support.

It’s OK for kids to have obsessions? Not something you hear every day.  But consider this story - paraphrased from a story I heard on the radio - about a boy and his obsession with snakes (which I originally posted here):

A boy with Asperger’s Syndrome is focused on snakes. He knows nearly everything there is to know about snakes, and can bring snakes into just about any story or subject. If he can’t make it about snakes, he doesn’t care about it. As it turned out, as a cumulative school project this boy had to prepare a report about the Battle of Gettysburg. The purpose of the project was to teach research and presentation skills. You guessed it - no snakes, the boy didn’t care and wasn’t doing anything on the project.

Until, that is, the adults in the bunch came up with the idea, “What if we let him do his report on The Snakes at the Battle of Gettysburg?” To make a long story short, this got the boy’s attention and he dove right in. To do the project, he had to learn as much or more about the battle and the geography, etc., as any other kid. His project was so good, and so unique, that he was asked to present his project to the entire school. Everyone wanted to hear the presentation about the snakes at the Battle of Gettysburg, and everyone thought it was great.

The kicker here is this: Before this presentation, everyone avoided this boy because all he wanted to talk about was snakes.

Some parting words on the subject of passion and obsession from Luke Jackson, written several years ago in his book Freaks, Geeks, and Asperger’s Syndrome when he was 13 years old.

Q: When is an obsession not an obsession?
A: When it is about football.

How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys ‘eat, sleep and breathe’ football and people seem to think that if someone doesn’t, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn’t shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

We’ve opened up a new front on the war on terror. It’s an attack on the unique, the unorthodox, the unexpected; it’s a war on different. If you act different, you might find yourself investigated, questioned, and even arrested — even if you did nothing wrong, and had no intention of doing anything wrong. The problem is a combination of citizen informants and a CYA attitude among police that results in a knee-jerk escalation of reported threats.

As the parent of a soon-to-be-adult son with autism, the words I’ve highlighted in Schneier’s quote above seemed to jump out at me.  All of them apply to my son, and I’m sure to many - if not all - autistic children and adults. This article came back to my mind as I read Kristina’s post Arrested: The Charge? Bad Behavior, in which she describes the arrest of a 13 year old autistic boy and a 19 year old man with fetal alcohol syndrome.  This is, of course, not the first such incident to have happened, only the most recent that I’ve become aware of.

There is a legitimate issue concerning what consideration, if any, should be given to a person’s autism diagnosis with respect to criminal activity.  (See, for example, the case of Gary McKinnon.)  But all too often people with autism are approached, and often apprehended, by law enforcement personnel simply because they are “acting weird” and making bystanders “uncomfortable”.

In his article, Schneier has two recommendations to stop this war on the unexpected.

We need to do two things. The first is to stop urging people to report their fears. People have always come forward to tell the police when they see something genuinely suspicious, and should continue to do so. But encouraging people to raise an alarm every time they’re spooked only squanders our security resources and makes no one safer.

…

Equally important, politicians need to stop praising and promoting the officers who get it wrong. And everyone needs to stop castigating, and prosecuting, the victims just because they embarrassed the police by their innocence.

More awareness by the public at large, and law enforcement specifically, about autism and autistics is key to at least remove autism and autistics from the category of “unexpected”.